STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

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rp1954
Posts: 1317
Joined: Mon Jun 13, 2011 1:13 am

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby rp1954 » Mon Mar 02, 2015 4:48 pm

Drebay,
If you're interested, what were the Sept-Oct CEA? It's hard to tell where your CEA was and what happened your first few months on Stivarga. Thank you so much, for those who have to look at Stivarga.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

drebay
Posts: 220
Joined: Thu Mar 20, 2014 5:39 pm
Location: Oregon

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby drebay » Mon Mar 02, 2015 5:11 pm

9/9 65.5
9/30 57.1
10/8 56.9
11/25 57.8
12/23 54.1
1/23 77.2
2/27 121.2

Dr. scheduled the CT after the big jump in January.
6/13 Age 45 mom of 11 and 13 yr old DX Stage IV liver mets
7/13 colon surgery
9/13 Folfox
11/13 Xeliri
3/14 more liver mets
4/14 Lung Met
4/14 Liver resect delayed;lung resect done
5/14 Surg not an option
9/14 Stivarga
3/15 Back to IV Chemo
6/15 Avastin
9/15 In Clinical Trial

jobasar
Posts: 429
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Facebook Username: Allie Genzer
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Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby jobasar » Tue Mar 03, 2015 2:27 am

Does your doctor revisit drugs in the past that worked on you. For me, folfiri worked and still does on my organs but not bones so stivarga will start soon. I've heard if you're off chemo for 6 months then you can re visit the previous one and it should work. My oncologist doesn't do that.

Thanks

Allie
dx. 12/24/08 w/stage 4 cc/1met to liver
C tumor removed on 01/02/09
Liver surg. on 04/09 clear margins
12 tx's chemo
9/09 NED
01/22/10/2 small lesions on rt. lobe liver.
Liver surgery 03/23/10/n
5/10, 8/10, 11/10, 5/11, 7/11, 9/11 NED

drebay
Posts: 220
Joined: Thu Mar 20, 2014 5:39 pm
Location: Oregon

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby drebay » Tue Mar 03, 2015 5:28 pm

jobasar wrote:Does your doctor revisit drugs in the past that worked on you. For me, folfiri worked and still does on my organs but not bones so stivarga will start soon. I've heard if you're off chemo for 6 months then you can re visit the previous one and it should work. My oncologist doesn't do that.

Thanks

Allie


Yes, I am going back on Irinotecan and 5FU. I have been off it long enough that my body will think it's a new treatment.
6/13 Age 45 mom of 11 and 13 yr old DX Stage IV liver mets
7/13 colon surgery
9/13 Folfox
11/13 Xeliri
3/14 more liver mets
4/14 Lung Met
4/14 Liver resect delayed;lung resect done
5/14 Surg not an option
9/14 Stivarga
3/15 Back to IV Chemo
6/15 Avastin
9/15 In Clinical Trial

JJ2212
Posts: 268
Joined: Mon Oct 14, 2013 3:54 pm
Location: Montréal, QC

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby JJ2212 » Tue Mar 03, 2015 9:51 pm

I saw my onc today after 3 cycles of Stivarga. Cycle 1 was with 4 pills (160mg), cycles 2-3 were with 3 pills (120mg) and now cycle 4 will be with 2 pills (80mg) only. It just seems to be too toxic for me and I can't handle the fatigue (for lack of a better word to describe it), mucositis and Hand/Foot syndrome. The pain from HFS during my week off was so bad that I could barely walk.

Unfortunately, the ongoing experiences reported on the board are mostly negative. But if my onc is to be believed, he has many patients on Stivarga that have little to no side effects. I've personally met 3 people on the same clinical trial as I'm on and they are breezing through it. Maybe there are many lurkers out there also having an easy time of it, so there is always hope for newcomers.

In the meantime, I hope to find the right dose for getting results and maintaining my QoL. Medically, my onc considers me perfectly healthy, other than the pesky stage 4 cancer. I wish I felt the same...

Janie.
Rectal cancer dx 04/13 @ 42, MSS, KRAS positive
T3N2M1 (1 lung met)
5 weeks xeloda+radiation finished 07/13
APR 9/13 (permanent colostomy), 27/31 nodes positive :-(
12 rounds of FOLFOX 04/14
Lung met growth 11/14
26 cycles Regorafenib (Stivarga) from 11/15 to 01/17
New lung met and chest/neck lymph nodes 01/17
1 cycle Folfiri

Harry Briels
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Joined: Fri Mar 06, 2015 2:50 pm

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Harry Briels » Fri Mar 06, 2015 3:11 pm

I am new to this Forum.
I have read most of the experience of patients that use(d) Stivarga.

What I have missed completely is information regarding the effectiveness of this drug.
I read somewhere that Stivarga statistically adds an average of +6 weeks to life expectation?
Side effects are described in all detail, but I would like to know whether it is worthwhile, notwithstanding the often severe side effects, to use Stivarga just to live 6 weeks longer?
What can be expected?
Is it worthwhile to risk geting even sicker than when having chemo therapy and then just live 6 weeks longer?
This is in fact is the most important aspect of Stivarga I can think off!
I do look forward to reading your replies to my question;
Thank you
Harry

JJ2212
Posts: 268
Joined: Mon Oct 14, 2013 3:54 pm
Location: Montréal, QC

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby JJ2212 » Fri Mar 06, 2015 11:27 pm

Harry Briels wrote:... but I would like to know whether it is worthwhile, notwithstanding the often severe side effects, to use Stivarga just to live 6 weeks longer?


You ask a tough question Harry...

Since none of us know exactly how much time we have left, nor how much time Stivarga or any other treatment will actually add to our lives, you'll have a hard time getting definite responses. Personally, even if I knew that Stivarga only added 6 weeks to my life, with all the side effects I've had the past 3 months, I still don't know how I would answer your questions. Some days, I'd say 'damn right it's worth it' and others I'd say 'hell no, it isn't'.

So why am I taking this drug? It's the hope that this fairly new medication will help prolong my life indefinitely, to stabilize the cancer and get me to a cure. To my knowledge, the drug was studied as a 3rd or 4th line of treatment with many folks having exercised all other treatment options before starting Stivarga. My hope, and the hypothesis being studied in the clinical trial I'm a part of, is that the drug may have better results as a 2nd line of treatment, on patients whose cancers, while metastasized, are perhaps not as advanced as those part of the initial studies.

I don't think that Stivarga is the Magic Bullet we are looking for, but I do hope it will buy me time or get me to where my mets can be ablated/resected/zapped/whatever the hell they need to do to get them out of me.

My 2 cents.

Janie
Rectal cancer dx 04/13 @ 42, MSS, KRAS positive
T3N2M1 (1 lung met)
5 weeks xeloda+radiation finished 07/13
APR 9/13 (permanent colostomy), 27/31 nodes positive :-(
12 rounds of FOLFOX 04/14
Lung met growth 11/14
26 cycles Regorafenib (Stivarga) from 11/15 to 01/17
New lung met and chest/neck lymph nodes 01/17
1 cycle Folfiri

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lilacbreastedroller
Posts: 90
Joined: Thu Sep 05, 2013 10:25 am

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby lilacbreastedroller » Sun Mar 08, 2015 7:23 am

Hi, Harry. Six weeks is an average, probably taken from a bell curve. What stage cancer do you have? Or are you a caregiver? Your profile and message tag don't say anything - are you or a loved one contemplating taking Stivarga?

My take on any new drug is back to the bell curve. The side effects listed are a compilation of what has been observed in patients, but not everyone gets the same ones. And not all drugs work for everyone. Stivarga worked very well for me and extended my life much more than six weeks. Yes, I got some nasty side effects but I learned to manage them. Xeloda, another drug, also has hand and foot as one of the most common side effects, but I never got it. Some drugs I took worked very well, others did nothing for me all from the get-go, like irinotecan from which many people have great results.

My attitude with new drugs is to try it, see what it does for me, and how I tolerate it - you won't know where you fit on the bell curve til you try.

best
Karin
dx 6/1/12@45yo
RT, 4 liv, 5 lung
7/12 FOLFOX
2/13 Xeloda 4k mg/d
7/13 DC VAX,1k mg/d metro Xel
11/13 Erbi, Irino
6/14 clinical trial lirilumab, nivolumab
9/14 Stivarga
1/15 clinical trial immunotherapy (young TILs)
RT, mets to liv, lung, adrenal, lns

Harry Briels
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Joined: Fri Mar 06, 2015 2:50 pm

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Harry Briels » Sun Mar 08, 2015 9:26 am

Hi Karin,

Thank you for your reply and advice!

My daughter of 50 y was in Oct 2013 operated on because of colon cancer.
Thereafter mets were found in the liver.
She had more that 25 chemo therapies with various drugs but recently the chemo had to be stopped because her bone marrow did no longer generate blood of adequate quality.
In between she also had SIRT but this did not work out well.
Now the mets have spread to hip bone and lungs.
Next week she will start Stivarga treatment.
I am concerned about its severe side effects and wonder whether adding an average of 6 weeks to her life expectation is worthwhile?
How long ago did you have the Stivarga treatment?
Wouldn't it be better to forget all these ineffective horrible treatments and switch to a comfort treatment and accept what is coming, but in the meantime enjoy what life is left?
Her ONC hopes that Stivarga will help her for a while and that then new treatments will be offered.
This gives my daughter hope!
A very sad story!

Harry

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lilacbreastedroller
Posts: 90
Joined: Thu Sep 05, 2013 10:25 am

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby lilacbreastedroller » Tue Mar 10, 2015 7:24 am

Hi, Harry. I'm sorry about your daughter. She's close to my age. It's a shame that in the US, colon cancer screening is not taken seriously until after age 50.

I started Stivarga in September of 2014 and stopped in January 2015. It was still working but I'm now on a clinical trial, and they wanted me to stop taking it. In other words, I didn't quit because it was no longer effective. If I am kicked out of the trial, I will likely go back on Stivarga unless they find another trial for me.

re: opting out of chemo. I was supposed to be dead by last Christmas. Last fall, I was not doing well. I had lost a ton of weight, had no energy, and was largely bedridden. Nearly all the chemo drugs had failed and I was inoperable. After the failure of my last clinical trial, both oncs (mine and the research doctor) suggested Stivarga, which was new. I figured, what the heck, I'll try it. I took it for two weeks and my stomach felt queasy so I stopped it. I went to the beach for two weeks, and just stopped taking it. After the beach trip for some reason I decided to try it again. But I was a really bad patient and some days if I didn't feel like taking it, I didn't! Well, first onc visit afterwards, he checked my cEA and it had dropped several hundred points! OMG! So then I was motivated to keep on taking it, which I did. Long story short, I lived past Christmas and was able to get into a clinical trial. Stivarga gave me a nice Thanksgiving and Christmas with my family, and the time to make the next leap.

You're right about the palliative care option, and your daughter will know when it's time to do this. I'm prepared as well. It's something we all face. I was there last fall, but unexpectedly, I was at the high end of the Stivarga bell curve and it worked for me. You never know.

good luck to your daughter and to you as a supportive parent.

Karin
dx 6/1/12@45yo
RT, 4 liv, 5 lung
7/12 FOLFOX
2/13 Xeloda 4k mg/d
7/13 DC VAX,1k mg/d metro Xel
11/13 Erbi, Irino
6/14 clinical trial lirilumab, nivolumab
9/14 Stivarga
1/15 clinical trial immunotherapy (young TILs)
RT, mets to liv, lung, adrenal, lns

Harry Briels
Posts: 3
Joined: Fri Mar 06, 2015 2:50 pm

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Harry Briels » Tue Mar 10, 2015 10:48 am

Hi Karin,
Thank you for your mail showing that all hope doesn't necessarily be gone!
My daughter Liselotte will start Stivarga tomorrow and is very nervous about this.
Perhaps she can later become part of a trial like you did?
Her onc's problem with such trials is that you can be in the group that gets a placebo and then you are just gambling with your life unknowingly!
What is your feeling about the placebo risk?
Your trial is with Immuno therapy (young TIL's)?
This treatment seems to be to fight melanoma? Is this correct and why is it tried for your kind of cancer?
Thanks again for your help!
Harry

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lilacbreastedroller
Posts: 90
Joined: Thu Sep 05, 2013 10:25 am

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby lilacbreastedroller » Wed Mar 11, 2015 8:50 am

Hi. This clinical trial (young TILs) has been opened up to patients with solid tumors and I believe there are five cancers in the trial. Yes this therapy did have early successes with melanoma patients. I've read that melanomas are easier to treat because they have so many mutations. Solid tumors are a challenge, apparently.

For information about clinical trials and placebos, please read my post/thread entitled "clinical trial information" . Those of us who posted information there may have answered some of your questions. In the US, not all trials have placebos! Participants (*ie patients) definitely have choices, and can choose to participate in a trial without any risk of placebos.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50424&p=387102&hilit=clinical+trial+information#p386604

Are you in Germany? If so, here is the link to the EU's clinical trials database. Some of the US trials have test locations in Europe as well.

https://www.clinicaltrialsregister.eu

best,
Karin
dx 6/1/12@45yo
RT, 4 liv, 5 lung
7/12 FOLFOX
2/13 Xeloda 4k mg/d
7/13 DC VAX,1k mg/d metro Xel
11/13 Erbi, Irino
6/14 clinical trial lirilumab, nivolumab
9/14 Stivarga
1/15 clinical trial immunotherapy (young TILs)
RT, mets to liv, lung, adrenal, lns

Regan
Posts: 249
Joined: Sun Mar 02, 2014 11:58 pm

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Regan » Fri Mar 27, 2015 8:57 am

Firstly, I want to express my deep gratitude for the information on this thread (AND this forum).

To those of you who have been or are currently on this drug, did any of you have metabolic nodes anterior to aorta at L4 and other Retro-peritoneal active areas?

My hubby is cannot take anything with 5FU (heart issues).
Is currently on Irinotecan (third treatment reduced to 50% due to side effects).

Onc has suggested Regorafenib as a possibility in the future. I made an involuntary face and said "oh, it's that tough, newer drug?" (Thanks for info here).

His response was immediate and he said with emphatically. . .
"yes, it is. It has a 1 in 4 chance"

I responded: "25% chance it wont work and he'll have the potential horrid side effects?"

Onc: "no, 75% chance it wont work and he'll have the potential side effects"

Then he asked me how I knew of all these drugs he was mentioning. He smiled when I said "colon club".

DH is going to do one more 50% Irinotecan and then CT. I asked for a Pet and onc replied it is an expensive test and "don't know what we would do with this info it provided that a CT wont show".

Ugh.
DH dx 7/12
Stg IV RC liver mets
11/12 Hrt Attk by Folfox
1/13 Liver resct
4/13 LAR-Temp
NED
1/14 revrsal
4/14 Hrnia surg 4/14
1/15 local recur, liver, lung, aortocaval region of retroperitoneum, anterior wall of distal abdominal aorta
2/15 Irinotecan
1/16 Lonsurf (fail--just zapped. Strength)
Aug 10, 2016 at rest

skypup
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Joined: Mon Dec 17, 2012 12:12 pm

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby skypup » Fri Mar 27, 2015 11:32 am

Ugh, Regan, so glad you are aware of regorafenib and it's difficulties. And thank goodness you have a pretty honest onc. Hugs and solidarity as you try to make decisions.

jobasar
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Facebook Username: Allie Genzer
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Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby jobasar » Sat Mar 28, 2015 1:57 am

I've been on stivarga now for a week and I just am fatigue. I don't have other side effects right now. Don't know if that's good or bad?


Allie
dx. 12/24/08 w/stage 4 cc/1met to liver
C tumor removed on 01/02/09
Liver surg. on 04/09 clear margins
12 tx's chemo
9/09 NED
01/22/10/2 small lesions on rt. lobe liver.
Liver surgery 03/23/10/n
5/10, 8/10, 11/10, 5/11, 7/11, 9/11 NED


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